Dementia in care homes and COVID-19
Supporting residents, supporting carers, supporting homes
Updated: 18 May 2021
Published in collaboration with Alistair Burns, National Clinical Director for Dementia and Older People's Mental Health at NHS England and NHS Improvement
People living in care homes can now receive regular indoor visits from up to five named visitors. Visits from other family and friends are possible using visiting pods, screens, window or outdoor visits. Visits out of the care home are also possible, and with the right arrangements in place, people going on outdoor visits will not need to isolate on their return.
This includes attending medical appointments, visiting day centres, attending educational settings and going to work, as well as outdoor visits with friends and family.
This is a quick guide for carers in care homes supporting residents living with dementia during the coronavirus (COVID-19) pandemic. It will discuss four clinical situations that may help to illustrate some challenges. These include:
- Understanding signs of COVID-19
- Helping residents with confusion
- Managing behavioural challenges
- Supporting residents with end-of-life care
Key messages about dementia in care homes in relation to COVID-19
- One third of people with dementia in England live in care homes.
- Three quarters of residents of care homes have dementia.
- People with dementia may not fully understand the significance of, and need for, isolation.
- A carer wearing full personal protective equipment (PPE) could be frightening to a person with dementia (for example, a mask could even bring back negative images of wartime).
- Communication may be a challenge and clinicians may have to rely on the signs rather than symptoms of COVID-19.
- Delirium is much more common in people with dementia – it can be distressing and cause challenging behaviour.
Understanding signs of COVID-19
The most common symptoms of COVID-19 are a new continuous cough, a high fever and the loss of or changes to taste and smell. However, some older people have symptoms that are different. People with dementia can have challenges in communication, which means that saying that they feel hot, for example, may not be straightforward. Carers should look for signs rather than the symptoms of COVID-19. Signs are things that doctors and clinicians observe; symptoms are things people complain of, such as a headache.
Practice example: Mrs Patel
Mrs Patel is aged 83, has had Alzheimer's disease for four years and has been in her current home for 18 months. She has diabetes and heart failure and is quite frail. She used to be visited by her husband every day, but that stopped when residents in the home developed COVID-19. Mr Patel notices during a Skype call (which their granddaughter organised), that his wife is not her usual self - she is agitated and easily distracted. She has no complaints, is sleeping well but is off her food and has had some diarrhoea. The care staff wonder whether a mild sedative would help. When a care worker checks her temperature, she finds it is 38.6°.
As carers, you know the resident best of all, and the change that could indicate they have COVID-19 can be as subtle as the person just ‘not being themselves’. It's a bit like recognising someone with dementia may be in pain: by observing their behaviour. All residents should be assessed twice daily for a high temperature and new persistent cough. In situations such as the example above, the results of a clinical assessment should be taken into account before considering starting a sedative medication.
Sometimes, people with dementia can be upset about being cared for by someone wearing PPE. Here are a few things you can do to ease any stress:
- Have your name and picture clearly visible on clothing.
- Laminate a smiley face and flowers on PPE.
- Use tone of voice and open body language to demonstrate warmth.
- Draw or use written words to communicate where appropriate.
- Explain why you are taking a sample – these may need to be repeated.
- Play some of the person’s favourite music to aid relaxation.
- Ensure hearing aids and glasses are worn and working.
Helping residents with confusion
Confusion is common in older people. The medical term ‘delirium’ describes episodes of confusion which are caused by a physical illness such as a chest infection or urinary tract infection. What happens is that the infection upsets the normal functioning of the brain and can cause symptoms such as loss of memory, poor attention, agitation and sometimes visual hallucinations (seeing things). Confusion comes on quickly (sometimes called acute confusion), and people with dementia are 30 times more likely to become confused.
Practice example: Mr Wang
Mr Wang is 73 and was recently admitted to his care home, because his wife and family feel they are unable to care for him at home and need some additional support. He has had Alzheimer's disease for five years. He settled into the home fairly well and saw his family regularly through window visits due to COVID-19 visiting restrictions. Mr Wang has made friends with another Chinese gentleman in the home who is on the same unit and enjoys spending time sitting in the day room with him. One morning, his carer notices that Mr Wang is particularly tired, which isn’t surprising as the night staff reported that Mr Wang was up for three hours the night before, pacing around the home. He was gathering up items of clothing and laundry which were being organised by one of the carers.
Mrs Wang comes for a visit later that day, and is upset because he does not recognise her – she had been told that this could be one of the symptoms of dementia, but this is the first time it's happened. The carer notices that when he's been to the toilet there is a bit more of a smell than usual from his urine. Over the next day, he becomes much more agitated and his son, who cannot visit due to visiting restrictions, speaks to him over the phone and is able to help calm him down. His GP prescribes some antibiotics and over the next week he gets back to his normal self. The staff ask the family about his obsession with clothes. The family say he owned three dry cleaning shops and had worked in the garment business all his life. The care staff distract Mr Wang by asking him to help to organise the linen and bedsheets in the home.
Infections can present in different ways in older people, and infections of the urine (particularly if people become dehydrated) are common. Using something like This is me from the Alzheimer’s Society helps bring a person’s history to life and can help carers understand behaviours. Confusion in people with dementia and COVID-19 can be prolonged and the symptoms can be more severe.
Managing behavioural challenges
It is not uncommon for residents of care homes to have behaviour which challenges. This can result in a call for a prescription of anti-psychotic medication or sedative to manage behaviour.
Practice example: Mr Smith
Mr Smith is 69, has frontal dementia and has been in his current care home for a year, as his partner could not meet his needs at home. Mr Smith does not appreciate the need to follow the guidance on leaving the care home, saying that he does not understand why he cannot go out as he always did. He becomes agitated when he tries to leave the home and is told by staff that he has to stay. He has never been aggressive but has raised his fists to staff when they stop him opening the front door. He was in hospital recently with a chest infection and tested positive for COVID-19. The care home contact the GP and ask her to prescribe an antipsychotic to control his behaviour. He is on a Deprivation of Liberty Safeguards (DoLS) order.
The home receive advice from the local community mental health team. As part of the discussion with Mr Smith's partner the home agreed that he should become a named visitor for Mr Smith. Through conversations with his partner on the phone and meeting more often in person, Mr Smith begins to understand the need to follow the guidance, which is why the front door of the home is locked. The staff put visual images on the front door to remind Mr Smith not to go out. He becomes less distressed and does not need antipsychotic medication.
A personalised care plan to manage behavioural disturbances is important for people with dementia. Often, a person-centred approach can help diffuse such behavioural disturbances. Alternatives to drugs should be tried before prescribing medication. Specialist advice should be sought if medication is being considered. There is excellent guidance on assessing mental capacity.
Supporting residents with end of life care
It is always upsetting for care home staff when a resident dies and, during the COVID-19 crisis, this is likely to happen more often. A resident could have lived in the home for some years and is seen by the staff as a member of their own family. It may be particularly difficult with the restriction on family and relatives visiting.
Practice example: Mrs Jones
Mrs Jones is 87, has mixed Alzheimer’s disease and vascular dementia and has been in her current home for five years. She is recognised as being in the last days of her life and has an advance care plan, which states she does not want cardiopulmonary resuscitation. She has symptoms of COVID-19, and care staff are awaiting her test results. She has difficulty breathing and seems distressed. Mr Jones, who has been married to his wife for 68 years, is 89, quite well and, until the coronavirus outbreak, was visiting her every day. He has been supported by the Alzheimer’s Society and is in regular contact with his dementia advisor. Mrs Jones has been placed on an end of life care pathway and has been prescribed hyoscine and morphine sulphate. Mr Jones has been provided with PPE and so is able to sit with his wife during the last hours of her life. He was holding her hand when she died.
Care at the end of life should be personalised. The symptoms of someone with dementia dying are the same as for individuals without dementia. A bespoke care plan allowed Mr Jones to be able to be with his wife when she died. Advance care plans can indicate a person’s wishes at the end of their life. There is some further guidance in My future wishes.
Support from SCIE
SCIE's COVID-19 hub contains more relevant information including safeguarding, supporting people who are isolated and vulnerable, and infection control. It can be used when supporting and safeguarding adults and children during COVID-19, and can also be shared with community groups.